How long does it have to be for repeat mri for worsing myocarditis symptoms

[12dr]

Thankyou I have been in touch via your phone line .Feeling anxious as symptoms no better backwards forwards to a &e for bloods all normal every time feel like I need another mri to see if any changes .

[Geejay1709]

Morning! I was diagnosed with myocarditis in October, since then I've experienced worsening pain. I've been to A&E twice and had an appointment with a Cardio consultant. When I saw the consultant early December he increased my colchicine (doubled) and advised an MRI in March 2022. I assume they don't do them regularly because it takes time for the inflammation to reduce? My last visit to A&E was boxing day, following advice from my GP and the BHF nurse helpline, when the registrar told me my troponin level was 2, and that indicates myocarditis is resolving, but the pain was probably pericarditis and costochondritis.

I was told that myocarditis takes 6 months + to resolve and didn't realise that if the troponin levels were 'normal' it meant myocarditis had gone, anyone else been told this?

The consultant had told me in December that you don't get pain with myocarditis and that I 'almost definitely' have myopericarditis...

So I understand your anxiety, I feel the same which is not helped by the confusion caused by the medical advice🙄

Hopefully you do have an MRI planned to assess whether your myocarditis has resolved and no lasting damage😊

[12dr in reply to Geejay1709]

Sorry you been having pain and we’re diagnosed in October .Good that Troponin is 2 mine has always been normal as it’s not always raised in myocarditis Good that you have a rescheduled mri .Have you had an echo to assess things ?

[Geejay1709 in reply to 12dr]

Yes I've had several echos, all show my perfectly functioning heart😀 apparently the echo doesn't show the inflammation?

[12dr in reply to Geejay1709]

I had an echo and was normal 6 weeks ago,but mri 3 weeks ago showed resolving myocarditis aparently and edema t 1 t 2 increased what ever that means I was wondering g if had another echo whether it would show mri findings and whether worse or better as feeling worse 😔

[Geejay1709 in reply to 12dr]

I'm sorry you're feeling worse, it's awful not knowing😔I think t1 and t2 is something to do with the ecg and electrical impulses? I had inverted t waves, because of a septal aneurysm which apparently is 'nothing' - well it is to me if its in my heart and shouldn't be there!!!I have myocardial oedema too, but again told nothing to worry about. I always feel I should make more of a fuss and ask many more questions after the appointment but never do...

The registrar when I was in A&E on Sunday said the only way to assess myocarditis recovery is with a Cardio MRI, and only did the echo to make sure my heart was functioning I.e. no blockages etc

Can you speak to your GP?

❤️

[12dr in reply to Geejay1709]

I have inverted t waves too.Like you say these things are not supposed to be there and sorry you have anyurism and oedema.Have you found you get breathless and irregular heart with your myocarditis ? I find this support group site very informative and a great support 🙂

[Geejay1709 in reply to 12dr]

Yes very breathless, and irregular heart beat, I'm waiting to be strapped to a ecg for 72 hrs to see what's going on.People on here have been amazing and so quick to respond to my questions and concerns, it's so nice not to feel alone😊

I hope you feel better soon, ut seems our condition is very similar!

[Neil0000]

Try to remain carm, anxiety will not help try to learn breathing exercises,

[Terrywill12]

I was diagnosed in September with myocarditis. This was my second MRI I had one in July after my triponing levels where raised and was told I had a heart attack with overlying pericarditis.In September I was admitted again and a different cardiologist repeated the MRI and said I'd had myocarditis not a heart attack and that I'm left with mild scar tissue from the inflammation.

I still have chest pain and palpitations to this day. I had a follow up a few weeks ago and cardiologist said I could stop the colchicine and aspirin as September MRI showed no inflammation.

However I have to stay on the bisoprolol due to the scar tissue and weakened ejection fraction

I found that most of my aches and pains have gone since stopping colchicine.

Cardiologist also said he can't see s reason for me to be still having pains and breathlessness as there was no active inflammation.

He is repeating the MRI in September 22 and I am awaiting an implantable device to record HR incase I have been left with an arrhythmia.

Myocarditis is awful.

[Geejay1709 in reply to Terrywill12]

Really interesting that since you came off colchicine aches and pains have gone, mines got worse since the dose was increased! Not only my chest pain, but back, and knee strangely🤔

[Terrywill12 in reply to Geejay1709]

Honestly the difference is amazing. I took a colchicine yesterday because got few stabbing pains in chest I feared a flare up so took one. Within an hour my back neck arms and chest ached badly I knew then that it must of been the colchicine. Not had anymore since and the aches have gone.